Key factors in parental end-of-life decision making for surgical necrotizing enterocolitis: A Delphi study

Abstract

Background/objectives: In severe cases of necrotizing enterocolitis (NEC) in preterm neonates, surgery may be the only option for survival. However, the consequences of active treatment are not always in the infant's best interest, urging parents and physicians to consider palliative care as an alternative. This study aims to identify key factors parents prioritize when making this decision, as a preliminary step towards developing a decision support tool.

Methods: Three Dutch parent panels (without experience with NEC/preterm birth, with experience but without loss, and with loss due to NEC/preterm birth) were asked to rate 31 literature-based and self-suggested decision factors. Factors were rated on a scale of 1 to 9 in a two-round Delphi study. Factors that reached a median score of six or higher by one or more panels after the second Delphi round were discussed in a consensus meeting of the steering committee.

Results: Sixty-six participants completed both Delphi rounds. Nine factors were excluded after the final round, including parental physical and mental health, finances, and religion. Of the other 22 factors, the steering committee decided upon 15 key factors to serve as a base for the decision support tool. Most important factors included chance of death, short- and long-term physical consequences, and future independence. Additionally, parents were influenced by doctors' opinions and feelings of responsibility and hope.

Conclusion: This study highlights fifteen decision factors for Dutch parents facing surgical NEC. These insights will inform the development of a decision support tool aiding parents in making informed end-of-life decisions.

Keywords: decision factors; decision support; end-of-life decisions; necrotizing enterocolitis; palliative care; parental values; preterm birth.